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Fibromyalgia
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Posted 2/15/2013 4:37 PM (GMT 0)
Many times on these boards, we advocate knowing yourself and becoming informed about your condition. A patient is their own best advocate.

Can this go too far? In other words, where is the line between useful knowledge and not-very-helpful knowledge? There is such a thing as information saturation and information overload, especially in the internet age.

IS all information valid?
Are all information sources valid?
IS all information equal?
IS all information pertinent?

That's all I am going to type, for now.

Thoughts?
Posted 2/15/2013 4:45 PM (GMT 0)
Oh, I definitely believe there can be too much especially with something like fibromyalgia where you won't necessarily have all the symptoms or that could fall under illnesses. I know it's so tempting to google things but you really have for to check the sources and follow up on any kind of herbs, vitamins, etc with your doctor before pursuing them. Also, just because webmd says its fibromyalgia doesn't make it true. If webmd were always true I'd have hundreds of types of cancers and rare African illnesses caused by bug bites.
Just take everything with a grain of salt. Definitely advocate your own health but don't become a full time google hound, no matter how tempting. Fibromyalgia isn't progressive, so odds are you've felt the worst of it. Anyway, just my 2 cents.
Posted 2/15/2013 4:57 PM (GMT 0)
I totally agree with Angelic about this....especially with fibro.  We have so many symptoms that are the same as other illnesses.  We should not be our own doctors but we do have to know about fibro in order to be our own advocates.  Self-diagnosis can be disasterous, too.  We can "diagnose" ourselves as having fibro but we really have lupus or Lyme, MS, etc.  Consequently, we won't be helping ourselves one single bit.

 

I think the most important thing to do is make sure you have an excellent doctor who treats fibro patients.  That's the biggest hurdle.  Then, keep yourself informed and bounce all things off your trusted doctor.  I never take anything without consulting with my doctor first.

 

Lastly, listen to your body.  You know your body better than anyone else.  If you have concerns, then see your doctor.  We are not doctors here.  We do offer our experiences but, as you all know, what works for one doesn't necessarily work for another.  

 

Good questions, Myself!  When you use the word "all" in your questions, that means the answers to them are NO.  Nothing is right all of the time.  We just do the best we can.

 

Sherrine 

Posted 2/15/2013 5:21 PM (GMT 0)
I believe it is is my own best interest to be an active participant in my health care. I'm one who does research on my conditions. The websites I use are from major teaching hospitals, such as Mayo or John Hopkins.

You are right to say, we know our bodies better than anyone. There are exceptions to every rule and lab tests are not always telling. As a patient we need to know how to explain things so doctors understand.

My body is far from the typical. I have a condition known as psuedothrombocytopenia. It is a condition that had doctors confused. At the time my doctors thought my severely low platelet count was due to my autoimmune conditions or the meds I was on to treat it.

A normal platelet count is 140-440 K/ul. I was getting counts of only 14. They were worried about bleeding and I was sent for a spleen ultrasound...many times a sleenectomy is done, but the ultra sound showed my spleen was not enlarged.

I was then referred to a hematologist/ oncologist and had two differant bone marrow biopsies, both came back normal. The doctors then assumed the low platelet count was due to my autoimmune diseases. I was worried beyond belief and did oodles of research on the internet about low platelets. The next time I saw the hematologist, I asked him about something I read. Platelet clumping due to the chemical EDTA inside the blood collection tube. Sure enough, my blood was clumping due to that chemical. I now have to get my platelets collected in blue top citrate tubes or I will end up with false readings.

Pseudothrombocytopenia is very rare, and it would make sense that autoimmune disease can cause low platelets.

If it were not for my research, I wonder how long it would take for it to be figured out. I was on the verge where they were going to begin platelet therapy and that could of been dangerous.

Before any test or surgery, I do my own research and ask my docs, lots of questions...I just feel better if I do.

Hugs, Robin
Posted 2/15/2013 6:30 PM (GMT 0)
Yes, we do need to document what is going on so our doctors understand. We have to do our part of the job to get better, and so does our doctor. But the process they go through is so much more complex than perhaps we as patients realize. Finding the problem may take far longer than we patients like, and may involve more tests and more visits. But medical conditions do take time to figure out the symptoms, which family of conditions it comes from, which specific conditions, which medications might or might not be helpful, and which ones actually seem to work with this particular body.

And there is NO substitute for a medical doctor's expert opinion. We are not smarter than they are!

I guess I am cranky today. I have been thinking this for a while now, after a poster asked about a purging diet of dichotomous earth. She had been doing it for a week and felt worse. Well, yeah, sure you did!
Posted 2/15/2013 7:08 PM (GMT 0)
Patients should be able to ask inteligent questions of their doctors, and doctors should be respectful to tell them they don't know the answers when they don't.

A patient needs to be insistent when they know something is wrong. If a doctor is going to write off your symptoms like it is nothing, it is time to get a second opinion.

Years ago, I had docs who were dismissing my symptoms off the being perimenopausal.

Being an advocate for yourself means doing what you can in partnering with a doctor who does care and takes time to listen.

Doctors are the experts and our questions should not intimidate them.

hugs, Robin
Posted 2/15/2013 7:15 PM (GMT 0)
I'm a bit on the fence with this one. I've experienced a mis-diagnosis for a medical condition other than fibro, and it took a lot of patience and perseverance to get a correct diagnosis. If I had listened to the first Dr., I would have just believed that my Meniere's disease was anxiety. rolleyes I've also had a condition that was so rare my doc (at a major teaching hospital) called in all of the residents to participate and asked if he could write a paper about me. That one took a little time to diagnose too, but this time I started with a highly recommended doctor.

So, I guess my take on the matter is that you need to do enough research to be able to keep seeking answers if you don't feel that you are being treated properly. But, having said that, I do believe the treatment needs to come from a board certified physician. Sometimes you just have to keep plugging away until you get a good one. After all, someone graduated at the top of the class, and someone graduated at the bottom.

Any treatment that I personally pursue, however, is backed by current mainstream medical guidelines. I believe the internet can be a dangerous place with "cures" and "treatments" with no scientific testing, data, or evidence that do more harm than good. And, not to mention the fact that the internet can scare us to death.

If I have a problem, I might research it a little, but then I always seek medical guidance before I try any "treatment." If a treatment is recommended, I further research it and decide whether or not to pursue it. If I don't, I tell my doc why not. If I'm not happy with a current doc, I try another one.
Posted 2/15/2013 7:40 PM (GMT 0)
I definately do not try even over the counter supplements before checking with my doctor.

Early on, getting doctors to listen was difficult. Today, I am blessed to have a team of wonderful specialists. Having a healthcare team you trust is key.

Research can be knowledge...for me it is info I use to ask my docs about. It has helped me learn and understand my conditions.

hugs, Robin
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